Wednesday, 24 February 2016

OK. Cards on the table time. And I'm not a successful poker player so that phrase is normally followed by me taking up a different game.

I have type 1 diabetes and I've had it for a few decades.

I use a Medtronic Veo (Paradigm 554) insulin pump and
have done for just over 4 years. Before that I was injecting multiple times a
day.

I also use a Abbott Freestyle Libre glucose monitor for most of the time
and like it a lot.

I tend to eat what I want so do not follow a specific style/regime of eating.

All of the above are what I've chosen myself; apart from
number 1 and part of number 2, and what's important is that it works for me.
Which brings me to the subject of today's missive.

If you speak to anyone with diabetes, especially those
who've dipped their toes into diabetes communities, you'll find they have at one
point or another been told to try this method, food, insulin dosing technique,
injection site etc as it's perfect and everyone should use it. For the rest of
today we will call these the Diabetes Evangelists or D-Evangelists for short.

Diabetes can be a funny little monster and over time people
can adapt their management (or unmanagement) techniques in a way that suits
them the best. Which I find to be fantastic. For me it's a constantly moving
set of goalposts and often I'll try different things I've read or heard.
Sometimes this can take months or years of dedicated tweaking to be find the
best dosage, technology and energy provider (aka food) for them. Well done,
you're a star and you are winning. All good.

So what turns these diabetes gods into D-Evangelists. For me
it's a simple mind-set change that for them turns their thinking from being
proud of what they've achieved, into thinking that as it has worked for them it
both will work for others and must be used by others; otherwise they are
guaranteed hypos, DKA, bad HbA1c (as that's the best measure of success you know), future early death and complications. To
do other than them is just stupid and selfish.

And this is where I start to get REALLY frustrated. When I
first delved online seeking diabetes advice one of the early acronyms I came
across was YDMV. Now I forget where I read it first so many apologies to the
originator but if you're reading this you can know you struck a cord. Your
Diabetes May Vary. It's simple but sums it up perfectly. What works for me
might not work for you and vice versa.

Recently I've taken to screaming it at my screen quite a
lot. In the interests of making this ramble stuck in history and irrelevant in 12
months time I'm going to select a topic that for me highlights this perfectly. But it's also where I'm at risk of provoking
people when I'm really not attacking them. Before I start, you the reader must
understand this isn't a personal attack on anyone's beliefs or theories and I
applaud anyone who has found a way that works for them. Not everyone who does
the methods below is a D-Evangelist. There are plenty (the majority and
probably you) who aren't and I'm only talking about the D-Evangelists. Not you.
Probably. OK here goes. I can hear pencils being sharpened to remove me from
Christmas Card lists as I type....

Point 4 above is a perfect example of YDMV and D-Evangelism
at its best / worst. There are a few different diet techniques being talked
about a lot at the moment. Two examples are Low Carb, High Fat (LCHF) and Sugar
Surfing. A focussed D-Evangelist who has tried one of these and loved it will
spend a significant amount of time telling people that the only way to live
with diabetes (of any type normally) is to dedicate your life and diet to
either of the above. And whilst there are dedicated groups for discussion about
such things a truly dedicated D-Evangelist will drop a "LCHF/SS would fix
this" into any discussion on any vaguely related diabetes topic. It will
save the world you know.

D-Evangelism isn't only a diet thing and you can find them
lurking anywhere in the DOC. But I truly believe it only takes a small tweak to
turn a D-Evangelist into a sensible balanced community member who can be a
great experienced source of knowledge for people looking for more information
on a topic they are needing help with. But don't worry, we can save them.

All they need to do is change the basis of any advice to; 'you
might want to try this it works well for me', from 'you must try this as it's
the only way otherwise you will die early, blind and with no functioning internal
organs.' Did you notice the subtle change there? Did you? It's only a very
slight adjustment but it might possibly engage the reader a little more.

I'll quickly whizz through my list of 5 at the top to show
my thoughts on each.

Yes I've had diabetes a while but for me as I
got the pleasure so young it's the normal; so I think I've had it easier than
those diagnosed in their teens and upwards as they may remember 'normal' more
than me. My years gives me experience and memories of weaker technology but I still learn daily from those of younger pedigree.

I love my pump and might not have chosen another when I
started but as I had no choice it was irrelevant. I also like the newer 640G
having tried it but that doesn't mean I think other pumps are bad and that the
big M is the only choice for you if you're looking for a pump manufacturer. The
features and design, including a tube so I can't lose it, work well for me.
Other features on other pumps may work well for you or the person who is asking you for advice. For me using an insulin
pump works but I know for others it's just not for them and MDI is their
preference. No problemo.

I like my Libre a heck of a lot too. I find the ability
to scan and check, especially on the move, well worth the cost to me. But it's
not especially cheap (I'm avoiding a long discussion on relative CGM costs here)
and for some it doesn't work. That's fine too. If you're tempted I'd recommend
trying it - if it's available in your country - but if you don't want to or
don't like it, that's not a problem for me.

Eating fewer carbs does make my diabetes life a little
easier but I find grabbing food on the go much easier when not too carb
focussed and I quite like biscuits. That's how I roll. Ooo, rolls. Bacon rolls. Mmm. Where was I? Ah yes, if you try another way
and it works for you, it's all rosy for me.

So in summary; if you think you could be a D-Evangelist maybe
have a ponder on what you think the best way for you to get your message across might
be? And if you ever spot me showing traits of it you have permission to shout
"D-EVANGILIST" in my close proximity.

I went away and consulted my long-term friend and confidante Alanis and she agreed fully with the upcoming sentence. Who'd have thought it?:

The irony of this post is that I'm trying to suggest to
people they should adjust their advice style to something more like the way I
do it.

Disclaimer - please read!

I am not a medical professional in any way. Nothing on this site should be construed as medical advice. Your diabetes will vary. Contact your health care provider for specific questions and advice. Without sounding like a pharmaceutical company – do not change medication, dosage or philosophy without speaking to your DSN, doctor, consultant or witchdoctor.